(Editor’s Note: This is the second part of a three-part series on shame and its role in your caregiving experience. In our second part, we take a look at how shame enters a caregiving situation.)
When I think of how shame can come to a caregiving role, I think of Jeannette, a woman I helped care for about 10 years ago. Because I haven’t had the personal experience of caregiving, I’ve taken on hired caregiving job as a way to better understand the role. (It’s not the same, but it has common elements.) Jeannette was the mother of my sister’s friends’ husband. She lived with her husband, Ted, in a large home in an affluent suburban home.
She had dementia, they said. I often thought, though, that her diagnosis was closer to acute depression. And, now, I believe her underlying condition was shame about her depression.
Ted didn’t understand Jeannette—at all. He often grew impatient with her. She became a wisp of a woman, a haunted body floating in her home. She barely spoke, rarely smiled. (Although she smiled as I dusted and vacuumed—she loved to watch me clean.) Even worse, she barely had a bowel movement. Ted hated helping her in the bathroom; he yelled, she kept it inside. It was a disaster waiting to happen.
As a program manager for New Jersey’s Statewide Respite Care Program, I helped Eleanor, who cared for her husband who had Alzheimer’s. Eleanor, an obviously doting and caring wife under normal circumstances, would become frustrated when her husband misplaced his teeth, a behavior resulting from the disease process. She would become so angry with her husband that she would slap his face and then scold him as if he were a child.
Lori Palermo, who cared for her father until his death, spoke about her caregiving regret on an episode of Your Caregiving Journey. When her father was diagnosed with COPD, she didn’t understand how painful and comfortable his condition was. Only after his death, and after researching the disease process, did Lori better understand what her father felt. During his last months, his family would ask how he was feeling. He would say, “Fine.” Did shame (rather than pride) keep him fully disclosing his pain to his family?
Shame, the stuff we stuck in the closet, can get triggered when we see our care recipients in a vulnerable position. “Shame is a state of mind that gets triggered,” says Karol Ward, licensed psychotherapist and author of “Find Your Inner Voice: Using Instinct and Intuition Through the Body-Mind Connection.” And, worse, we often carry on the harsh, humiliating voice of our childhood caregiver, Ward says.
For Ted, who cared for his wife, Jeannette, perhaps the uncertainty of his role, and the worry about looking inept, sprouted from his childhood shame. When he derided Jeannette about her bathroom habits, was he echoing a voice from his past? For Eleanor, her misunderstanding of the disease led her to believe she must be an authoritarian figure to her husband. Was she re-enacting her experiences with a childhood disciplining figure?
Shame changes us. Ward offers the following warning signs that shame may be in control:
1. Who we are in our normal adult life disappears.
2. We have a sense of low energy, we feel tension in our body.
3. We feel anxious and tentative.
4. We have irritability, sadness, tearfulness.
In order words: “When we try to function, we become dysfunctional,” says Dr. Eric Shapira, a clinical gerontologist.
“Family caregivers have a concept of what caregiving should look like,” says Dr. Anna Stookey, a psychotherapist specializing in health issues. “But, the truth is, it’s really difficult. And, often there isn’t support for those feelings that get triggered.”
If a spouse who was shamed is now the care recipient, the shaming may continue. “It’s not uncommon for an abuser to be an abusive receiver of care,” Stookey says. “The abuser may say to the family caregiver, ‘You’re not doing that right.’”
If we go to the arena of past shame, then we begin to regress. Time spent with our care recipients may feel like time spent traveling backward, as we reverse from an adult of 45 to a child of five. “You can’t care from the place of a five-year-old,” Dr. J. David Forbes, ABIHM, President-Elect, American Holistic Medical Association and founder/director, Nashville Integrated Medicine.
When we become entrenched in our place of shame, we may feel unable to take action, says Ward. We may question our decisions that we may normally make without hesitation. “We become our inner critic,” Ward explains. “We pick up and activate the voice (of our shamer).”
When we take on that shaming voice, we may later feel guilt for not controlling that shaming voice. Unfortunately, the guilt only adds fuel to the fire of shame, now forming a vicious circle. We all can relate to our embarrassed musings after episodes in which we behaved childishly. Why, we wondered, did we react that way?
A family caregiver at a support group had this realization, Stookey says: Sometimes, caregiving is harder for the family caregiver than for the care recipient.
And, it’s really hard when we provide care from the place we were as children, still huddled hurt in a corner.
Resources
Shame: Secret Ally of Illness
Part I: The Genesis of Shame
Part III: Taking on Shame: How Healing Wholes Us
We took our discussion about shame live on Your Caregiving Journey talk show. Listen to our interview with Karol Ward about the intermingling of lives and shame in a caregiving experience on the player, below.
Wow, great article. One of the things I constantly have to do in caregiving for my mother is to not repeat her phrases to me as a child when she would become impatient with me. And if I do yell or try and correct her, I am getting much better at understanding it’s not her, but the disease I am angry at and that helps me to calm down and not do those things. But being sole caregiver, I also have learned to forgive myself and apologize to mom if I see myself getting tense. I know we both are in an impossible situation and sometimes one or both of us will snipe. However, just being aware of this all too human frailty can make the difference in our relationship.
I am glad someone is finally talking about this. It’s not hard enough having little energy and being sleep deprived, but to have to hold yourself up to an expectation of being the perfect caregiver by virtue of what society and our families project on us is unrealistic. I know I am going to make mistakes in caring for my mom just like she did raising me. All I can do is to try and do better when I fail. I wish people would have more understanding too that it’s not just about repeating a cycle, but also how the stress and frustration can mount and as a caregiver you become isolated with no outlet for it. I can’t remember the last time I went to the gym!